title: Thematic analysis of cardiac care patients' explanations for declining contribution to a genomic research-based biobank.
abstract: BACKGROUND
  Health care delivery systems increasingly ask patients to contribute biological samples for future genomic-based health research during critical care admissions, as the result of genome-based research requirements of unprecedented large sample sizes. Few reports describe patients' perceptions and responses to actual biobanking approaches in clinical settings. A qualitative study was conducted to explore 568 cardiac care patients' explanations of why they declined to contribute their samples to a future genomic research biobank.
  
  
  OBJECTIVE
  To (1) identify themes emerging from explanations for declining contribution to the research biobanking initiative and (2) determine how the content informs the stewardship conceptual framework that addresses evidence-based clinical ethics practices in genomic and genetic research biobanking.
  
  
  METHODS
  This qualitative study used an analytic method that combines inductive and deductive approaches to identify themes in patients' explanations for declining to contribute to a research biobank initiative. The hybrid design has relevance to health services research that seeks to develop taxonomy, themes, and theory.
  
  
  RESULTS
  Inductive approaches showed that themes of intrusion and autonomy dominated explanations. Deductive approaches affirmed previously proposed elements of a stewardship conceptual framework that addresses ethics in biobanking.
  
  
  CONCLUSIONS
  Research in understanding patients' perceptions can guide nursing and biobank practices in developing best practices.
authors.affiliation: College of Nursing, Medical University of South Carolina, Charleston, SC 29425, USA. wilpame@musc.edu
authors.forename: Pamela Holtzclaw
authors.initials: PH
authors.lastname: Williams
authors.forename: Lynne S
authors.initials: LS
authors.lastname: Nemeth
authors.forename: Jennifer E
authors.initials: JE
authors.lastname: Sanner
authors.forename: Lorraine Q
authors.initials: LQ
authors.lastname: Frazier
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018070:Biological Specimen Banks; D002318:Cardiovascular Diseases / Q000523:psychology*; D002985:Clinical Protocols; D003219:Confidentiality; D003422:Critical Care / Q000523:psychology*; D005260:Female; D036281:Genetic Research; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D036301:Qualitative Research; D012959:Socioeconomic Factors